Link to videos of talks from the CMRC conference

[NelliePledge]

@Rowena Ilagan @Anne @znahle

Still up although I did message through Facebook to point out the issues

 

[BS3boy]

I thought that the former patient (Phil Murray) was good on mentioning some patient concerns about using 'fatigue' as an outcome measure, and on problems with the HADS.

I totally recognise that this will have been a difficult thing for him to do, but I also want to make some criticisms (can't help myself). I thought he seemed pretty naive about the politics around CFS research.

He also said: "Even a few months ago one of my friends said 'oh I think it's psychological'... I mean, y'know, really, and she's a friend of mine" - what point was this meant to be making? He really seemed to stumble into the 'psychosocial construct' discussion in a way that was pretty unhelpful.

He said (around 19:00):

"And I speak for all the PAG when I say that we do not want to see headlines like this anymore. [Slide: Could Exercise be the cure for Chronic Fatigue?] Absolutely not."

...

"Or that: [slide with headline on PACE: "Exercise and positive thinking 'can help overcome' Chronic Fatigue Syndrome"]. Now I happen to know that's an appalling piece of reporting and it doesn't reflect the trial behind it, so I'm not criticising the trial, I'm just saying that's appalling reporting."

It was the PACE LTFU paper. How can you criticise the reporting, but not the spin and manipulation that came directly from the PACE researchers? That seems very weak to me. It's entirely the wrong way around. The problem is the spun research. Focussing on just some headlines... how many headline writers were in the audience?

Just saying "we do not want to see headlines like this anymore" without explaining why it is that the headline is inaccurate or misleading risks making patients seem opposed to uncomfortable realities ('anti-science' as Crawley would put it). Crawley cited PACE to claim "evidence from a recent trial of cognitive behavioural therapy and graded exercise therapy indicated a recovery rate of 30-40% one year after treatment". [As I note in my signature!] If he's not going to criticise Crawley, why would he criticise headline writers who promote her claims?

He makes some criticisms around 20:00, but they're all very vague, and again just drift into the 'biomedical' vs psychosocial stuff in an unhelpful manner. There was talk about it 'being real' in a way that could imply psychological conditions are in some way not 'real' (even if that's not what he meant, why risk giving that impression?).

I feel a bit bad being so critical, but I do think that there was some problems with that talk and it's best to openly discuss this stuff.

Hi Esther12 again, ha ha my failure to get approved on here was due to a typo in my email address - my bad - d'oh! Anyway, Yes, I had seen your criticism of my talk; it's fine; i was ill (not ME - a bug), and was moving house (!!!) all in the run up to the CMRC conference, so I wasn't / didn't prep nearly as much as I'd have liked to / should have done. I'm far from satisfied with my talk; but it was written by about 7 of the PAG (MEGA patient advisory group). Some poeple (eg charles shepherd, who i chatted to there) have said that my talk was better if you were in the room, than on YouTube. I'll take it !

I have a very good relationship with AfME and if i sense any bias towards wessley (retired from CFS/ME now?), white (ditto? apart from very bad consultancy for SwissRe....) or the more BPS side of Esther C's research I will absolutely speak out! As far as i'm aware, the SMILE trial (yuk) was funded over 5 years ago; the FITNET-NHS trial was funded a year ago (before i was involved) , and the MEGA project (not funded) is a biomedical resource if funded, which again is nothing to do with BPS/behavioural intervention (it's not even an intervention; it's a bio-resource - or hopefully will be).

I'm visiting the AfME office tomorrow so will ask about research, tho i suspect details of research they're currently funding is on their website (I've not looked to be honest)?

cheers, hope you're as well as can be with this horrible condition.
Phil

 

[Esther12]

it was written by about 7 of the PAG (MEGA patient advisory group).

Hard to get a punchy talk out of that(!), and sorry to hear you were feeling ill & hope you're doing better now.

I have a very good relationship with AfME and if i sense any bias towards ... the more BPS side of Esther C's research I will absolutely speak out! As far as i'm aware, the SMILE trial (yuk) was funded over 5 years ago; the FITNET-NHS trial was funded a year ago (before i was involved) , and the MEGA project (not funded) is a biomedical resource if funded, which again is nothing to do with BPS/behavioural intervention (it's not even an intervention; it's a bio-resource - or hopefully will be).

The SMILE spin was this week, Crawley's smearing of Tuller and other critics as 'libellous' was months ago... there's a long and consistent pattern of her doing poor quality work and then promoting quackery and prejudice. Why would anyone think it was a good idea to work with her? It seems pretty clear to me that the more funding and influence Crawley gets, the worse it will be for patients.

Action for ME still haven't shown that they even understand the problems with PACE yet, never mind getting around to apologising for their role in it. Why would they think that they're fit to be involved with future research? I really don't understand it, as no-one there capable of meaningfully assessing all of the problems that they've caused. How could their track record be worse? Surely, until they have shown themselves able to understand and speak out about the problems of the past, they should avoid risking making things worth by continuing to blunder on with future research.

I realise I haven't gone into a lot of detail above, but I wasn't sure what you already know - if there's anything I've said which you think is unreasonable then please let me know and I'll try to justify myself.

 

[BurnA]

or the more BPS side of Esther C's research I will absolutely speak out! As far as i'm aware, the SMILE trial (yuk) was funded over 5 years ago

Hi and welcome to the forums.
It might be worth posting on one of the MEGA / PAG threads ?

For example :

http://forums.phoenixrising.me/index.php?threads/are-you-on-the-mega-pag.48421/